Rare Disease Day Ruby Tuesday Gives Back (Sayville location)

The International

Foundation for CDKL5 Research to Join NORD in Observing Rare Disease Day

Holbrook, NY, 

February 28, 2014-----The International Foundation for CDKL5 Research will

be joining the National Organization for Rare Disorders (NORD) and others around

the world in observing Rare Disease Day on February 28, 2014.  On this day, millions of patients and their

families will share their stories to focus a spotlight on rare diseases as a

global public health concern.

“Everyone knows someone with a rare disease,” said Peter L. 

Saltonstall, president and CEO of NORD. 

“Rare Disease Day is a time to show support for the 30 million Americans

– and millions more around the world – living with rare diseases.”

A rare disease is one that affects fewer than 200,000 

Americans.  There are nearly 7,000 such

diseases affecting nearly 30 million Americans, according to the National

Institutes of Health (NIH).

Two-thirds of those affected by rare diseases are children, 

and the diseases tend to be serious and lifelong.  Even so, most rare diseases have no approved

treatment, and many are not even being studied by medical researchers.  Often, research on rare diseases is funded by

the families and friends of patients or by patient organizations.

On Rare Disease Day, patient organizations around the world 

unite to promote awareness of the challenges, hopes and needs of those living

with rare diseases.  For 2014, the focus

is on caregiving, and the global theme is “Join Together for Better Care.”

Two families within the Sachem community, representing 

The International Foundation for CDKL5 Research will be joining Ruby Tuesday’s,

Sayville NY in an effort to raise awareness for Rare Disease Day.  Bring your family and friends and join us at

the 5650 Sunrise Hwy location on February 28, 2014.  Please present flyer to your server and Ruby

Tuesday will give back 20 % of your purchase to The International Foundation

for CDKL5 Research, a foundation dedicated to find better treatments for

children suffering from difficult to control seizures and neurodevelopmental

impairment.

In the U.S., the coalition supporting Rare Disease Day 

includes patient organizations, NIH and other government entities, medical

researchers, hospitals and academic institutions, and pharmaceutical companies

developing treatments for rare diseases.

Rare Disease Day 2014 activities in the U.S. will include State 

Legislature awareness events, a Tribute to Caregivers and Handprints Across

America photo gallery on the national website (www.rarediseaseday.us), and events

in communities across the U.S.

Rare Disease Day was launched in Europe in 2008 by EURORDIS, 

the organization representing rare disease patients in Europe.  It is now observed in more than 65 nations,

and is sponsored in the U.S. by NORD.

For more information about Rare Disease Day activities in 

the U.S., go to www.rarediseaseday.us.  For information about global activities, go

to www.rarediseaseday.org). For

more information about CDKL5 go to www.CDKL5.com

Media contacts:

Patti Waszkiewicz IFCR

pattiw@CDKL5.com

(631) 807-0762

Mary Dunkle, NORD

mdunkle@rarediseases.org

Office: (203)
744-0100

Mobile: (203)
482-9934